It comes to my attention that family and some friends have a rather sweet notion that I lead a ‘glamorous’ life.

One minute I’m a sudden guest on Newsnight due to the Lord Freud debacle then, previewing Lost in Spaces at Soho Theatre, with its old insalubrious reputation bestowing a glint of the naughty, then off to The Royal Festival Hall to be naughty in Criptease – and now, look at me, the show-off. I am soon to Liverpool to the mighty DadaFest International 2014 to give my show a second airing – a fitting conclusion to nine months of intense development before the show tours in 2015.

I don’t wish to ruin their romantic notions of my life, but the reality is that for all those moments of glorious achievement, there are endless days of hard work – and the irritations of juggling different and complex impairments.

I’ll say it and be damned. Yes, there is pain too, a gnawing goblin in my bones. I hate it and always will. It gets in my way. No, I don’t think life isn’t worth living, no I don’t want to go to Dignitas, and no, I do not support the Dignity in Dying Bill.

Because, amongst many other pleasures, there are the words. Mine.

Oh, words words words words words words words words words.

Words. Into forms. Into stories. My passion. If I don’t indulge this passion I retreat into myself and dissolve into a mute weepy puddle. Excuse the self-indulgent moment.

It’s all about that; and I am alert as I can be with Bethany, my director and project manager, as we make lists for travel, ensuring a stress-limiting journey to Liverpool, booking train assistance and streamlining props. You know what? It’s exciting!

After a quick lunch it’s time to revisit the Lost in Spaces script.

I’m happy with the poems that feature in the show but want to tighten the structure. There’s a flow between the portrayal of stages in my life, coloured with music, photos and diary entries that must keep its focus. The visual must be supported with the spoken, and linking my life to the universal is key.

I do have a surprise for my Dadafest performance, a secret revealed only for the audience in Liverpool. If I tell you, I’d have to kill you, obviously.

Yawn. Lazy day on this windy-rainy Sunday afternoon, and I’m as indecisive as this weather. Film or blog?

Blog wins.

Yesterday’s Liberty Festival – many highs and lows. Highs – working with some great young poets as part of the poetry performances via the mighty Apples and Snakes. They did great, and I believe my performance was decent enough – though time seemed to have been rationed.

Always lovely to see old friends, and yes, many were there, in the chill and the sudden Autumn sun. In the Olympic Park. With Paralympians. And Boris Johnson. Because someone, somewhere decided this should be National Paralympians Day.

Liberty was squeezed in underneath, literally and metaphorically. On posters, with significantly much smaller typeface and at the event itself, which had a fragmented and diluted feel to it. One some of the information boards at the park, Liberty had dropped from sight entirely. I didn’t get to the main stage as everything was too spread out. Arts stalls were annexed by sport and more sport – something I will never be able to do. More pressure on us; this is how the government wants disabled people to be. Get sporty and then you can get work….. I do wish this pathetic and patronising rhetoric would stop.

I am not anti-Paralympians. My interest in sport is minimal, but I enjoyed seeing disabled athletes do their bit. I enjoyed the opening ceremony in which several of my friends featured.

And I appreciate performing at Liberty; in this instance I am grateful to Apples and Snakes for hiring me and paying me. But this complaint is not about Liberty, it is about the consumption of our festival into the grotesque spin around the Paralympics, which has less and less to do with us, disabled people, and more to do with politicians wanting to look right-on posing with medal winners.

Which brings me to Boris. I couldn’t believe he really was there yesterday. Built like a brick shit-house with that unreal unruly hair, he was surrounded by an entourage. I wondered, should I try an assail him? Yes, I should – so I zoomed off in my rackety old power chair in pursuit. Security and suits surrounded him. Anyone would think he was a star celeb.

The Boris Mass moved like a strange beast. Lots of people, press and bouncer types would set off at speed, as the Posh Blonde Buffoon strode towards another photo opportunity. I followed, but they were fast and closed ranks if you tried to get through the outer people-membrane. I gently tickled a security man-mountain with my steely footplates. Let me speak to Boris Johnson, I said. He blanked me.

I gave up. Perhaps my thoughts were too readable. Yes Boris, I want to press you about Cross-rail. I want to insist you tell your Tory chums to truly support disabled people at grass roots level, and STOP this scapegoating. STOP the disproportionate cuts. Oh but I’m just an old activist, a writer. I’ve never won a medal for anything sporty.

One of my poems was called Fuck the Cuts. But my politics were blowing in the wind, and seemingly not in the right direction.